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Raising Special Needs Kids Raising Special Needs Kids

DH told me that I was just looking for problems! **venting long**

Posted by on Jan. 14, 2014 at 1:30 PM
  • 9 Replies

I was on facebook the other day and someone posted a thing about epilepsy and the site "Epilepsy Foundation" so I clicked on it to see what this one had to say. Well they gave generalized info about the different types which Lina has 3 of what was listed. Then I saw "gelastic" & "dacrystic" so I checked them out because we know a Mom on here whose son has the gelastic type. Well I was reading it and the dacrystic symptoms match something that Lina does on occassion. 

"In some children the vocalization sounds more like crying and the facial contraction resembles a grimace. It is not uncommon for gelastic & dacrystic seizures to go undetected for years because of their unusual presentation. Often the seizures go unrecognized until some other type of seizure appears. Gelastic/Dacrystic often occur as a child is falling to sleep, but can occur throughout the day and night. Infants and children may be aroused out of sleep by the seizure then fall right back to sleep. Some children seek comfort from a parent or favorite toy for no apparent reason others will run to a location where they feel safe."                              

The dacrystic from what I could decypher were pretty much like the gelastic. Since 95% of Lina's seizures happen at night the possibility of her having the dacrystic because of what she does on occassion is probably when she would have them.

Here is what happens ON OCCASSION. She will be almost asleep or just having fallen asleep when she will begin to cry, she has no tears, she has a slight frowning face, she allows me to comfort her but never really wakes up all this will last maybe a minute or less.       She does at times have bad dreams and will cry in her sleep but those times it is a real crying with tears and waking up and takes awhile to calm her and get her back to sleep, there have been nights where she has been up for over an hour before I can get her to go back to sleep.

I was telling DH about what I had read and how those times when she cried like that. He said that I was trying to "give the kid more problems than she already has". I told him that I know the difference between nightmare crying and whatever this is that she does and I'm NOT trying to say that every time she cries during the night she is having a seizure. Well it went downhill from there until I just went outside to have a cigarette.

So here it is: Am I looking for more than what is really there or am I doing what all of us have done and am following the evidence and what my gut is telling me? 


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by on Jan. 14, 2014 at 1:30 PM
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Replies (1-9):
darbyakeep45
by Darby on Jan. 14, 2014 at 5:22 PM
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You are following your gut!!!  Do you think I wanted my son to have Gelastric Epilepsy?  He has SO many other diagnoses and the Gelastric Epilepsy is his most recent one.  I certainly wasn't looking for something wrong with him, but it surely explained things.  In turn, we went back to his neurologist, he had another MRI, and he started anti-seizure meds.  How are things now?  He's NO LONGER having those gelastric seizures.  Seriously!  They are 99% gone!  His "laughing spells" were indeed seizures.  He would wake up in the night having them as well.  They are SO hard to diagnosis as well as they crying ones Lina is having.  It's MORE than worth bringing up to her neurologist and see what he/she says.

What anti seizure meds is she currently on?

mandee1503
by Amanda on Jan. 14, 2014 at 8:06 PM
Nothing wrong with wanting to make sure she does doesn't have something. That way you can make sure it's taken care of. Sometimes I hate always seeing drs and specialist but I want my son to get everything he needs to have a fulfilling life.
Bluecalm
by Silver Member on Jan. 14, 2014 at 9:40 PM
I don't see anything wrong with checking into it. Your dh sounds like mine. He doesn't want anything else to be wrong so he thinks I shouldn't push for any testing.
arkansasmama08
by Gold Member on Jan. 14, 2014 at 9:59 PM
I'm laughing inside because I have both sides of that conversation with myself often. Maybe its this? No, now you're trying to make things work. No, it explains this and this. Yeah, but not ...

yeah, you get the idea. Just be patient with him. Easier said than done sometimes, I know. It'll work itself out. And until then, switch to yoga. More calming and wont kill you 😉
Linagma03
by Gold Member on Jan. 14, 2014 at 11:38 PM
Keppra 18ml and Trileptol 6ml.

Quoting darbyakeep45:

You are following your gut!!!  Do you think I wanted my son to have Gelastric Epilepsy?  He has SO many other diagnoses and the Gelastric Epilepsy is his most recent one.  I certainly wasn't looking for something wrong with him, but it surely explained things.  In turn, we went back to his neurologist, he had another MRI, and he started anti-seizure meds.  How are things now?  He's NO LONGER having those gelastric seizures.  Seriously!  They are 99% gone!  His "laughing spells" were indeed seizures.  He would wake up in the night having them as well.  They are SO hard to diagnosis as well as they crying ones Lina is having.  It's MORE than worth bringing up to her neurologist and see what he/she says.

What anti seizure meds is she currently on?

Mipsy
by Chelle on Jan. 14, 2014 at 11:46 PM
1 mom liked this
Omg me too!! I do the same thing!

Men just have a harder time seeing things I think. This is a very common complaint amongst all of my sn friends. The husbands just don't see things on the same level we do.


Quoting arkansasmama08: I'm laughing inside because I have both sides of that conversation with myself often. Maybe its this? No, now you're trying to make things work. No, it explains this and this. Yeah, but not ...



yeah, you get the idea. Just be patient with him. Easier said than done sometimes, I know. It'll work itself out. And until then, switch to yoga. More calming and wont kill you 😉
darbyakeep45
by Darby on Jan. 15, 2014 at 6:05 AM

Yeah, I'd definitely bring it up to her Neurologist and see what they say.  She might need an increase in dosage or even another medication to help those episodes.  Hugs mama!  I'm here for you!

Quoting Linagma03: Keppra 18ml and Trileptol 6ml.

Quoting darbyakeep45:

You are following your gut!!!  Do you think I wanted my son to have Gelastric Epilepsy?  He has SO many other diagnoses and the Gelastric Epilepsy is his most recent one.  I certainly wasn't looking for something wrong with him, but it surely explained things.  In turn, we went back to his neurologist, he had another MRI, and he started anti-seizure meds.  How are things now?  He's NO LONGER having those gelastric seizures.  Seriously!  They are 99% gone!  His "laughing spells" were indeed seizures.  He would wake up in the night having them as well.  They are SO hard to diagnosis as well as they crying ones Lina is having.  It's MORE than worth bringing up to her neurologist and see what he/she says.

What anti seizure meds is she currently on?


jjamom
by Michele on Jan. 15, 2014 at 9:43 AM

This sounds like me and my DH sometimes.  More often than not, I am right and he is finally coming to that realization.  It's only taken 16 years of parenthood to get him there, though, LOL!

Linagma03
by Gold Member on Jan. 15, 2014 at 1:40 PM
1 mom liked this

He better come around to some kind of understanding soon. 

Quoting jjamom:

This sounds like me and my DH sometimes.  More often than not, I am right and he is finally coming to that realization.  It's only taken 16 years of parenthood to get him there, though, LOL!


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